“It’s exciting to partner with you to explore one of the most baffling medical mysteries of the 21st century, chronic fatigue syndrome”

The team has grown…

The Stanford Chronic Infectious Illness Initiative led by Dr. Jose Montoya began in 2010. If they’ve been quiet lately, it’s not because they haven’t been busy. With a basketful of exciting projects, new staff members, a new advisory board and a growing biobank–not to mention Stanford’s hosting of the big IACFS/ME conference in March of next year–they’ve been busy.

“Our Initiative for infection-associated chronic illnesses is now focused on chronic fatigue syndrome”

For one thing it’s no longer the Chronic Infectious Illness Initiative; ‘chronic infectious illnesses’ have stepped down and ME/CFS is now front and center. It’s simply the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative now.

Movement

They’ve Grown – They are substantially larger, and now list 21 people on their team including three research coordinators, three Clinical Care professionals, a neurophysiologist, a cardiologist, three immunologists, three radiologists, one research assistant, two undergrads, and two high school student volunteers.

Dr. Montoya is steadily gathering support for his ME/CFS initiative at Stanford.

They’ve Published—Three papers are out on antiviral treatment with one more being submitted for publication that looks at how men and women respond differently to antivirals.

They’ve Expanded Their Search—I don’t know about you, but hearing that a group is studying parasites (toxoplasma gondii), fungii (coccidoidesimmitis), and bacteria (borrelia burgdorfii) along with the usual suspects makes me feel kind of like we’re in the hands of some real experts. They didn’t mention that they’re also studying herpes simplex, a herpesvirus that’s not on any other group’s radar but which one ME/CFS theory paper suggested could be at the heart of ME/CFS.

They’ve now got an Advisory Committee—It’s a good one. It includes the former head of the Trans-NIH Working Group, Dennis Mangan, who shook the NIH up good during his short time there and promised he would stay engaged with ME/CFS after he retired. The group also has our own Dr. Lily Chu (ME/CFS patient and advocate), Stanford immunologist Mark Davis , Stanford MD and author Abraham Verghese, and others.

It couldn’t have easy establishing an ME/CFS program at one of the most highly rated medical schools in the country–they’re usually the last to fall, so to speak, with a disease like ME/CFS, but Montoya has persevered and the program is finding its legs, and is growing.

Studies Underway

Pathogen/Immune Study IA

We’ve heard a lot about the Chronic Fatigue Initiative’s big pathogen study with Mady Hornig and Ian Lipkin, but my understanding is that Montoya has his own pathogen study going. Montoya reported that all the samples have been collected and analysis has begun. If this is an entirely separate study, then we have at least four separate pathogen studies going–a kind of amazing turnaround from the pre-XMRV days when the NIH stated it would not fund pathogen studies in ME/CFS.

Now we have the monster study at the Chronic Fatigue Initiative looking at blood, saliva, tears, fecal matter, and spinal fluid; the Montoya Stanford study; and the CFIDS Association and CDC BSRI studies. Since there must be substantial overlap in the patients across the studies, if the results agree with each other the results could be validated very quickly.

Pathogen/Immune Study IB

The Stanford Initiative goes beyond the herpesviruses usually associated with ME/CFS and is looking for fungi and bacteria as well.

The pathogen study lays the groundwork for the immune system factor study (involving cytokines, gene expression and phospho-immunoflow) to see if pathogen A is correlated with immune activation or down-regulation in patients X,Y and Z. If pathogens are found, this study will help indicate what impact they’re having, and, since a pathogen doesn’t necessarily need to be particularly harmful in order to be significant, that’s the next crucial step in the process of validating pathogen harm in ME/CFS. Nobody’s done this before that I can recall.

The study is also looking for new biomarkers that reflect improvements on medications (shades of Dr. Kogelnik’s work at the OMI). Essentially they’re trying to find out what changed in the patients that improve on antiviral and other medications. If they can do that, they may be able to find the immune system hole that’s driving the pathogen activity. Then, hopefully, they can focus on fixing that.

Aided by a DOD grant, the Montoya team is also assessing HLA antigens as well as stimulating the immune cells and determining how they respond. (A recent putative fibromyalgia biomarker suggests immune cells in that disorder are under-responding to immune stimulation.)

The Brain

Montoya will be using cutting-edge MRI techniques (not found in clinics) to identify structural changes in the brain, and MRV (magneticresonance venography) to look at blood drainage from the brain—a fascinating topic. Several years ago Perrin, an osteopath, proposed that lymphatic drainage backing up in the brain was causing many of the symptoms in ME/CFS. Recently we saw that a Chiari malformation can disrupt fluid flow from the brain in ME/CFS-like patients, leaving it engorged with toxin-ridden blood. Now, in another first, Montoya appears to be checking out whether venous outflows are backed up in ME/CFS as well.

The Cardiovascular System

Several studies are investigating cardiovascular aging in ME/CFS patients

With all the autonomic nervous system work going on elsewhere, and with Montoya hitting every other avenue he can, it’s not surprising to find him dipping his toe into cardiovascular functioning. In fact he’s dipping more than his toe in. By putting ME/CFS patients on a bike and by testing their endothelial (blood vessel) functioning, he’s assessing the ‘aging’ of a system, the cardiovascular system, that you’d really not want to age prematurely. Then again, with all the blood flow issues in ME/CFS, it might be surprisingly if it hadn’t aged. MERUK in the UK found arterial stiffening—a sign of cardiovascular ‘aging’—in ME/CFS years ago. All the study data is in and they’re analyzing the results now.

Next Up

The Montoya group will be collaborating with several others in a gene expression and immune study of Lyme patients. This, too, is unusual; most researchers focus on ME/CFS or Lyme, but Montoya’s focus on both—using the same lab tests—will be invaluable to see how people with chronic Lyme differ from those with ME/CFS. I imagine there will be significant overlaps and, if there are, that will open the door to further collaborations and interactions between the Lyme and ME/CFS fields.

A Comprehensive, Multi-System Stab at ME/CFS

From pathogens to the immune system, to the brain, to the cardiovascular system Montoya appears to be getting every department he can at Stanford involved with his chronic fatigue syndrome (ME/CFS) studies. Given his emphasis on infection associated patients, and his ability, hopefully, to enroll the same patients in multiple studies, we could be getting a quite comprehensive view of what’s happened to them.

If you can link pathogen presence to immune dysfunction to brain issues to cardiovascular symptoms, you can start to build a pretty convincing model of ME/CFS. There’s no telling what percentage of patients these findings will apply to, and Montoya’s been quite conservative in his estimates.

From a program that, from a distance at least appeared to be struggling at one point, Montoya has built a growing team that enjoys the support of important leaders at Stanford. The Dean of the Stanford Medical School, no less, Dr. Phillip Pizzo, supports the Institute and has been integral in its development, and one of Dr. Montoya’s collaborators, Dr. Mark Davis, is the Director of the Institute for Immunity, Transplantation and Infection. Dr. Montoya appears to be steadily turning ‘the conversation’ regarding ME/CFS around at Stanford- the 2nd ranked medical school in research in the country.

Biennial educational meetings are planned, and they hope at some point to establish an in-patient clinic separate from the hospital that features capability to administer antivirals as well as complementary medicine. Things are looking up at the Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative.

Comments

I am so happy to hear this news!! I love Dr. Montoya and he has such a heart for all who suffer from ME/CFS. One of his determinations is for us to get an apology one day from the medical community for all that we have suffered. When he started out, he was told going into ME/CFS was career suicide. He has proved them wrong! We needed some good news today!

I’m sure he was told he was committing career suicide and I’m sure it was pretty rough in the beginning and I’m sure its not a piece of cake now, but Montoya’s obviously done a good job of convincing his peers that he’s onto something.

I think you hit it right on the nose; Montoya has a huge heart, plus an great brain to go along with it plus the guys got guts!

I love that it’s happening at Stanford.

(By the way the DHHS stated they were holding off on the consensus definition contract because of the uproar :). So two bits of good news for today…)

I am so grateful to know that Dr. Montoya has the backing of the Dean and so many different specialist now involved in trying to find answers for those of us who suffer daily. Any test Dr. Montoya wants done by me, I’ll do. Even if it’s a 3 hour drive one way for a prick in the arm or a spinal tap. After these pathogens tking over my body and life, I’m willing do do whatever is asked of me.
Thank you so much Dr. Montoya for caring about us and creating such a remarkable group of professinals in studying everthing that could be contributing to these pathogens. Just Awesome!!

These are the kind of minds and souls that we need engaged in the battle against this monstrous disease. I think Prof. Montoya and his team as well as Dr. Kogelnik will find quite some answers and will translate those into treatments. I couldn’t have a better birthday gift! Go Stanford!!! And as usual a big thank you to you Cort for reporting and spreading the news ;).

As a four year + patient of Dr. Montoya’s I can tell you he is indeed a very caring and sympathetic man. He is a tremendous addition to the CFS community. No one cares more about our plight than he does. He is a brilliant infectious disease physician.

That said most of the “Initiative” is smoke and mirrors. I was asked to drive an extra hour (making a one way 3 hour drive) to give a blood sample for Dr. Lipkin. Then the tech never showed up, and they dropped out of the study- jez I wonder why? I’ve been asked to participate in studies, given my contact information- and then never contacted. My wait is always 2 1/2 hours making my total time 8 hours! Hey where’s that second study?

It’s nice to give CFS some big time, big name recognition but for me when he ran out of infectious disease ideas I became chopped liver. Although still treated as a friend because I’m a doctor.
Gregory G Cutler DVM

Thanks for the reality check it would seem that we are honestly in need of lately. The title of the article: CFS MAKING INROADS AT TOP MEDICAL SCHOOL would lead me to believe that the university is teaching the students something about CFS/ME. Not. ONE researcher in his clinical area of Infectious Diseases is what we are talking about here. Outside of his physical arena, I doubt you could find one other person on the grounds of Stanford (be it the clinical or the teaching end) able to describe what Myalgic Encephalomyelitis is. Sadly, we haven’t gotten much of anywhere yet and ongoing research only demonstrates further how complicated and multi-faceted and sub-setted this disorder really is. Hey! I just adopted a doggie this past Sunday and that’s meant everything that’s good to me! Wanting to close on a positive note….. marcie myers

Yes, there’s no new clinic at Stanford and I doubt anyone is teaching about ME/CFS explicitly but medical schools are huge research centers as well. You might also ask how a researcher at a medical school can be on team that finds problems in ME/CFS and not have that filter down to his/her teaching as well….

Montoya has recruited researchers from immunology, cardiology, radiology and the neurosciences to participate in ME/CFS research at Stanford. He has department heads on his team. He has the backing of the Dean of the Stanford Medical School (You don’t put out a statement like that without getting the Deans OK that you’re publicly stating that he’s backing. He’s got a top notch advisory Board (which includes a Depart ment head).

He had none of that a year and a half ago. He’s clearly making inroads into the Stanford research community and that’s a very good thing. If one of the those researchers decided to make ME/CFS a focus, as Montoya did, that would be huge. If you go to one of the conferences you tend to see the same faces over and over again. We really need outside researchers to join in and Montoya is bringing new faces in. He’s planting ME/CFS seeds in the 2nd ranked medical school in the country.

Hey also got about 8 research projects underway – that’s progress! It may not be the kind of progress that you’re looking for, and hopefully that will come, but I see it as considerable progress.

Montoya is focused on infection associated patients; if you fit it you’re in; if you don’t you’re not. That’s kind of harsh given the lack the ME/CFS doctors out there but it’s also understandable. He’s using his resources to focus on a certain group of patients. I do get how disturbing it probably was to no longer have access. It’s too bad we don’t have more ME/CFS knowledgeable doctors.

His work is going to fit one subset of patients. We’ll see in time how big that subset is; it may be small or it may be large…

I don’t know but his list of research projects suggest that Montoya dropped out of the Lipkin studies to produce his own pathogen study. As to the logistical problems – they seem particularly to be rampant in ME/CFS physicians offices, I assume, because they’re trying to do so much at once. I hear complaints about that regarding other offices as well.

I see it as a virtue that Dr Montoya and others (Lerner, Chia) are focussing on infectious diseases in ME since it is highly likely that a big chunk of ME/CFS has an infectious aetiology.

Dr Lerner’s discovery of a novel antibody in the blood in ME due to PARTIALLY-REACTIVATED EBV and his successful (partially at least) treatment of it with anti-virals is a good example of this type of research.

When research like that is confirmed and duplicated the nomenclature will change: people will be said to be suffering from “partially-reactivated EBV”. The ME/CFS tag will lose it’s stigma, its mystery, and perhaps even its usefulness. Millions of misdiagnosed people will get an accurate diagnosis confirmed by a relatively simple laboratory test, followed by effective treatment.

Nice to see that other doctors are looking at the possibilities of pathogens causing issues with the immune system. These could also cause issues with blood flow. The doctor that I see is also thinking this is a big part of our pictures. He has found with a good many of his patients with MS, Lupus, CFS and POTS that we all have this as one of our issues. It won’t be long and he will have a peer reviewed paper (hopefully, by the end of the year) on his findings. He’s treating us with low-dose antibiotics and a protocol similar to a malaria treatment and lyme disease treatment —-along with a very specific type of diet —is making great improvements for many of us. A good bit of the immune system is in the gut and it makes sense that what we take in and what we use could affect that. He will be doing a conference soon that is in regard to CCVSI and feels that this protozoa and the biofilms that it lives in could be affecting the blood flow issues and causing many of our problems.

Nice to see some advancement and to be one of those that is seeing improvements.

I just have to say how thankful my husband and I are for this blog and the writers. Last night we worked to send our emails – sent them again today and hear news on here today of the suspension of the plan. Today I read this encouraging article! Thank you Cort! Many days, I can not concentrate enough to read the whole article, but then my husband will read it and summarize it for me. I don’t comment often, but just wanted you to know we are thankful for these posts!

I’m glad to see a comprehensive overview of what’s going on at Stanford as I live less than an hour away. I am in both the Pathogen study and the qEEG study and was also contacted regarding the cardiovascular study and have not had any problems with communication or study visits (unlike Gregory). I am on the patient waiting list and will see how things go on the clinic side when I eventually get in. I don’t have huge expectations regarding anything but getting testing and a consultation regarding whether viruses are playing a role in my ME/CFS.

I was told the Pathogen study I’m in (IA above I think) was a multisite study. In any case I was told the first round of testing using MassTag is completed, and apparently it is not a very useful test, as very few organisms were found. So now the blood is being run by High Throughput Sequencing, which can detect all DNA that is not human. They have completed 50% and are still working on this, how soon it is completed depends on Columbia University.

Good article, it sounds like at least some progress is being made; I look forward to reading the papers. The CFIDS Assoc. should get a nod as well since it was due to their work that ME/CFS became an eligible research subject for the Congressionally Directed Medical Research Programs. Also, I don’t see a link to the newsletter in this article, it would be nice if one was included.

I’m using B1 to very good effect. After reading all this, I wonder if someone will every figure out WHY the B1 in massive doses helps some of us.

There is something very wrong going on in our cells if we require megadoses of some basic nutrient. The theory I’ve seen is that the metabolic pathways for normal creation of energy in the cells requires active uptake of B1, but that because we don’t take it up correctly, those pathways don’t work – unless we make so much B1 available in the bloodstream that the cells get it PASSIVELY.

Makes a sense of sorts to explain why B1 can help, but it seems like a clue is being missed as to WHY the cells don’t work. Maybe some of this research will discover the reasons – and a way to fix them – that cells don’t make energy properly. Here’s hoping.

Hi ABE, perhaps you could add some L-Cysteine and Molybdenum to the B1. That’s the core of many anti-hangover remedies on the market.
It seems the big culprit is Acetaldehyde. That would seem to implicate a systemic fungal infection, which would definitively degrade the immune system in the gut as well as compromise the brain and all the organs to a degree, depending on one’s genetic profile and other issues.
Nevertheless, I haven’t seen absolute iron clad proof that CFS isn’t actually Late Stage Lyme and/or perhaps one of the co-infectors of Lyme.
I was part of an outbreak back in the late sixties and my sister has M/S, so no doubt it is a transmissible disease for the susceptible. RP

Thanks for a great piece Cort, good to see such a comprehensive approach being taken to the illness.

CLARIFICATION RE PATHOGEN STUDY STUDIES
I think I can explain the confusion over apparently overlapping pathogen studies. I’m pretty sure they are all being carried out by Mady Hornig (in Ian Lipkin’s group). But the samples come from different places. So there is
– a CFI cohort of 200 patients and 200 matched controls
– Dan Peterson’s sample of 60 very well characterised cerebro-spinal fluid samples of ME/CFS patients and healthy/sick controls
– Mady has also talked about a very large Montoya sample of 400 patients + same number of controls that she was trying to include. So I suspect that this is a Montoya/Hornig pathogen study, part of the overall Hornig pathogen study
– there were also plans to include the NIH XMRV cohort of 150 patients + matched controls, don’t know if that got funded.

Thanks for the info. It’s pretty confusing. Dr. Peterson reported that Dr. Montoya dropped out of CFI study and was replaced by ???. However, in the newsletter Montoya says he’s still working with Lipkin and Hornia. With your information we know he’s still working with them but perhaps in a different way than originally planned.

Nice to see qEEG used. Dr. Frank Duffy, the father of qEEG, said it showed there was objective evidence there was something wrong with ME and CFS patients as far back as 1999. And Siber Imaging has been working with CFIDS/ME/FM clients utilizing qEEG (brain mapping) and neurofeedback since 1990. In the early stages of the company’s existence, Dr. Preston and Kim Phillips designed research studies, which have been presented at national and international symposiums by Dr. Paul Cheney, Dr. Charles Lapp and Dr. Ian Hyams.

Hi Cort.
Thank you for this.
I am one who has seen Dr. Montoya, but now seeing Dr. R in FL…. However subsequently I believe Lyme is part of the picture, for me. I have now researched for years (personal research) ME/CFS, been in the community, but also more recently part of the Lyme community. I think there may be big connection indeed, more crossover dialogue between tick-borne disease (not just lyme) and ME/CFS. Soo glad Dr. Montoya is looking at this now.

Do you, or any of his other current patients, know by chance HOW he confirms Lyme? Does he send bloodwork to Igenex? E.g. a lab which includes Band 31? Does he use the strict/specific/(perhaps not sensitive enough) CDC standard– requiring the 5 of 10 bands– or rather the 2 of 3 positive bands as Igenex and other LLMD’s use to determine if there’s been Borrelia exposure?

( Lyme testings/diagnosis is very controversial, for those of you not familiar with it… As much as 30-70% insensitivity with the major tests used, depending on which literature you read)

I am pushing to see the Infectious Disease department as I only live 4 miles away from Stanford. Given my 6 months of chronic and come-and-go complications and symptoms, I’m hoping they’ll accept me. My list of symptoms overlaps greatly with all of the major diseases: CFS/ME, Fibromyalgia, Lupus, and MS. And, daily use of Valtrex is the ONLY thing that gives sufficient therapy. No kidding! Unfortunately, none of the 17 doctors i’ve seen (through 35 different visits) has much to say about Valtrex being effective. And 1/2 of them don’t believe what i’m saying. Not surprised. Not surprised.